German Epilepsy Association

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German Epilepsy Association
logo
legal form Registered association
Seat Berlin
motto Act consciously, live confidently!
purpose Promoting a self-determined life for people with epilepsy
main emphasis Epilepsy Self Help
Employees 2
Website epilepsie-vereinigung.de

The German Epilepsy Association e. V. is the federal association of epilepsy self-help in Germany. The German Epilepsy Association was founded in 1988 and sees itself as representing the interests of all people with epilepsy and their relatives in Germany.

Goal setting and cooperation

The German Epilepsy Association (DE for short) is the federal association of epilepsy self-help in Germany. The aim of the association is to help people with epilepsy to lead a self-determined life and to improve their chances in disease treatment, training and work. The representatives of self-help want to be recognized as equal partners in the health care system. In addition, the German Epilepsy Association is committed to educating the public about epilepsy and counteracting the isolation of people with seizures.

The German Epilepsy Association maintains relationships with the International Bureau for Epilepsy (IBE) and the self-help associations in Switzerland and Austria. She also works with the medical association, the German Society for Epileptology (DGfE). There are also close contacts to the Michael Foundation and the Association for Social Work in Epilepsy. In addition, she set up a working group for epilepsy self-help in Germany, which the Epilepsy Federal Parents' Association (ebe), the Dravet e. V. and all regional associations for epilepsy self-help.

history

The first epilepsy self-help group in the Federal Republic of Germany came into being in the mid-1970s. The first nationwide meeting of epilepsy self-help groups took place in Berlin-Charlottenburg in 1981, from which the annual conference of epilepsy self-help groups in Freudenberg (Siegerland) developed from 1983. The German Epilepsy Association was founded there in 1988. Your previous chairmen were

  • Jutta Leonhard
  • Ottokar "Oka" tree
  • Klaus Göck (from 1991 to 2006)
  • Norbert van Kampen

Honorary members

The German Epilepsy Association has the following honorary members

Own memberships

The German Epilepsy Association is a member of the organizations

activities

Member magazine ideas

The member magazine einfalls appears four times a year with a circulation of 5000 copies. The aim of the ideas is, on the one hand, to inform the members about the association's activities and to offer them a forum for exchanging ideas with one another. In addition, it is also about informing people with epilepsy and their relatives about topics that can help them to cope better with the disease.

Information materials

This includes the series of information leaflets that are currently being published on more than 40 different topics on medical and socio-medical aspects of life with epilepsy. The task of these information leaflets is to present the respective topic in a short, clear and layman-understandable way and to inform the reader where they can get further information and support. The information leaflets are available free of charge from the Federal Office and can also be downloaded from the Internet. They are requested and distributed by many institutions from the care system for people with epilepsy, epilepsy counseling centers, regional associations, self-help groups, etc. There are also detailed information brochures such as epilepsy in everyday life and information on epilepsy in easy language . In addition, the German Epilepsy Association has several children's books such as the picture book Lisa and the special thing on offer that parents can read to their (seizure) children in order to inform them about epilepsy in a form appropriate to them. Lisa and the special thing also contains a story of siblings, so it is for both children (epileptic) and for their siblings suitable. These materials are financed by funds from the Federal Ministry of Health and self-help funding from the health insurance companies.

The website contains content that provides information about the clinical picture of epilepsy and how to cope with the disease. They are adapted to the interests of the members and those who seek advice from the German Epilepsy Association.

Seminars

Every year the German Epilepsy Association offers a series of seminars on different topics, which are usually held in small groups of up to a maximum of 20 participants. The aim of the seminars is on the one hand to inform the participants about the relevant topic and to support them in coping with their epilepsy. In addition, the seminars serve as a multiplication instrument, because many of the topics discussed here are taken up by the regional associations and self-help groups and are incorporated into their work. Since the seminars are also attended by participants from different self-help groups and federal states, they enable the groups to exchange ideas with one another.

The working conference of the German Epilepsy Association is a larger event on a specific topic, which is attended by an average of 80 to 100 people. Topics in recent years have included, for example, “New opportunities in epilepsy treatment”, “Epilepsy and genetics”, “Epilepsy and work”, “Epilepsy and psyche”. They are financed by funds from the Federal Ministry of Health, the German Pension Insurance and the self-help funding provided by the health insurance companies.

Epilepsy Day

When the day of epilepsy (Oct. 5) is, to the Day of Action, which every year is a special theme and take place at the nationwide actions with respect to the respective order of the day: information stands in pedestrian zones, information and discussion events of support groups and state associations , high-profile events, etc. The aim of the day of action is, on the one hand, to sensitize as broad a public as possible to the concerns of people with epilepsy, to improve knowledge and to reduce prejudice. On the other hand, it is about informing people with epilepsy who have not yet had any reference to self-help about the activities, encouraging them and showing them ways of dealing with the disease. The day of epilepsy was celebrated for the first time together with the DGfE and other epilepsy organizations on October 5th, 1996 in Heidelberg and at that time it had the topic “The first attack”.

consultation

The German Epilepsy Association offers advice from those affected to those affected twice a week as part of a voluntary counseling telephone.

Political advocacy

At the political level, the DE represents the interests of people with epilepsy together with the BAG Selbsthilfe, the DGfE, the Verein Sozialarbeit bei Epilepsy and the Epilepsy und Arbeit network. It is important that the patient side is represented in the Federal Joint Committee (by Klaus Rozinat and Mario Hecker). It is still a focus of activities there that people with epilepsy receive all the therapies they need and that the costs are borne by the health insurance companies. One focus is that the procedure for the early benefit assessment of new drugs is designed in such a way that it is based on the reality of care and the needs of people with seizures and not on theoretical targets that ignore actual needs.

Dissemination of information and public relations

The German Epilepsy Association receives inquiries for information material on specific topics, contact persons for specific questions (e.g. in epilepsy treatment) from people with epilepsy and their relatives, as well as from employees in the care system for people with epilepsy, by telephone, email or post experienced psychotherapists, specialized social services etc.) or for speakers for events. For journalists from print media, radio and television, the German Epilepsy Association establishes contacts with people with epilepsy and / or their relatives who are willing to make themselves available to contribute.

financing

The work of the Federal Association of the German Epilepsy Association is financed through funds raised, membership fees, donations and support from the pharmaceutical industry (in that order). The sources of funding are made transparent on the website of the German Epilepsy Association.

The funding comes almost exclusively from the self-help funding of the health insurance companies on the basis of Section 20c SGB V, from funds from the Federal Ministry of Health and from the German Federal Pension Insurance .

The membership fee is staggered from 30 euros to 75 euros per year as a regular fee up to 750 euros per year for companies. Included in the membership fee is the subscription to the magazine “ einappen” .

Research-based drug companies and manufacturers of aids for people with epilepsy make a financial contribution to the existence of the German Epilepsy Association through donations as part of the so-called pool funding. This does not involve any consideration from the German Epilepsy Association. This source of funding is also disclosed on the website of the German Epilepsy Association.

structure

The German Epilepsy Association is divided into a federal association, currently five state associations and four state representatives as well as self-help groups at the regional level. The federal association is based on individual members and has several subordinate state associations, currently in Hesse, Berlin-Brandenburg, Lower Saxony, North Rhine-Westphalia and Saxony-Anhalt. Some federal states without their own state association have state representatives. The coordination of the activities and mutual support of the federal association, state associations and state representatives takes place in the self-help advisory board.

Most of the activities at all levels are voluntary; only the federal office in Berlin and the regional association in Berlin-Brandenburg have employees. The federal association is headed by a five-person board that is elected for a period of two years and also works on a voluntary basis. The work of the board of directors is supported by an office located at Zillestrasse 102 in Berlin-Charlottenburg . The current board elected in 2018 consists of Stefan Conrad, Sybille Burmeister, Heiko Stempfle, Eva Schäfer and Lynna Held.

The basic work of the German Epilepsy Association takes place in the self-help groups. There are around 250 self-help groups in Germany for people with epilepsy or for relatives of people with epilepsy, many of them are corporate members of the German Epilepsy Association. The focus of the work of many self-help groups is the common conversation and the exchange of experiences on all topics related to epilepsy (discussion groups) as well as information events and joint activities.

Web links

Individual evidence

  1. ↑ einfallen No. 147/148, Article 30 Years of the German Epilepsy Association, pp. 50–58.
  2. ↑ [1] www.dgfe.org/Informationspool Epilepsie, section Cooperations, accessed on June 11, 2020
  3. ↑ [2] www.Sozialarbeit-bei-Epilepsie.de, accessed on June 11, 2020.
  4. ↑ [3] www.epilepsie-vereinigung.de, section AG SHG associations, accessed on June 11, 2020
  5. ↑ The Development of Epilepsy Self-Help. In: Self-help group yearbook 2004 , pp. 37–48, here p. 39.
  6. ↑ ideas No. 126, p. 15.
  7. ↑ Members magazine . DE website, accessed on July 1, 2020.
  8. ^ "Information pool " on the DE website , accessed on June 11, 2020.
  9. ↑ Lisa and the Special Thing - A Children's Book About Epilepsy. EpiAktuell, accessed on July 1, 2020.
  10. ↑ day of epilepsy. DE website, accessed on July 1, 2020.
  11. ↑ Telephone advice. DE website, accessed on July 1, 2020.
  12. ↑ structure. DE website, accessed on July 1, 2020.